Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Kim- Hang in there! I'm so sorry you're going thru such a terrible time right now. I hope you get some answers soon. As you said, it's good that they're not finding anything bad, but you'd sure like to know what's going on. You'll be in my thoughts! Michele mom to Aubrie (10.5 mos) CHargE and (7 yrs) IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1998 Report Share Posted October 25, 1998 Kim, My son also had similar cyanotic episodes, the first one he had while awake, and the subsequent ones were while asleep. He would make a cat-like cry just before he would quit breathing. He had a bunch of tests done, none of which were really conclusive, but at 6 1/2 weeks, the docs decided to call them " seizures of unknown etiology " and put him on Phenobarbital. He went one year " seizure " free, was taken off, then had another episode in April of this year, only this time he made gulping noises before quitting breathing. I thought he was trying to vomit, but when I picked him up, he was completely stiff. After about a minute or so, he went limp, so much so I could barely hold him. He seemed unconscious, but was breathing. When the paramedics arrived, they said he looked post-ichtal (sp??) and once at the hospital he was put on Tegretol which he continues to take (so far without incident--touch wood!). I'm just glad that by some chance I had been nearby or just woke up by coincidence to catch him. Our prayers are with you and your family! Pagan mom to Marina 5, and " Buddha " Jr. 2 1/2 (CHARGE and seizure disorder) Killeen, TX Come visit us at http://www.geocities.com/Heartland/Plains/4452 ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 1999 Report Share Posted January 11, 1999 Kim- Haven't heard from you for awhile. Are you guys ok? Did Saleah have a surgery in Jan? (Sorry, my memory is going quickly...) Michele mom to Aubrie (13 mos) CHargE and (7 yrs) IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Kim- Sorry to hear about all the delays. You must be very frustrated! Hope it all falls into place soon. Michele mom to Aubrie (13 mos) CHargE and (7 yrs) IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Kim, We have had a hard time and a big run around to get Kennedy's ONE aid, now she needs another, so it's going to be going through that all again. I know how you feel, it's bloody frustrating. I hope she gets them soon, it has been heck trying to keep Kennedy's on, but I think it's worth it, she seems to do better with them on. Every day is getting better, we had almost five hours today on! Keep your chin up, I hope Saleah is feeling better soon. Mom to Kennedy 11 mos old CHARgEr, 9, 7, and wife to Graeme New Brunswick Canada > From: MAY181998@... > > Michele, > > I've had no time to check e-mail for about a week. Surgery was posponed > AGAIN, because Miss Saleah decided to get sick on New Years Eve. She is still > sick. She got really congested and the doc put her on antibiotics and > breathing treatments 3x/day, then steroids for 3 days. She is still caughing > a little, but is getting better. So, we're scheduled for the 29th...Fingers > crossed... > > Also, we were supposed to get her hearing aids today and they cancelled > because they say now she has to have an ENT look at her ears before we can do > that. So we're trying to get the referral for that, then we can't get in > until Feb. 2nd for the aids. It sucks... We've been getting the run around > on this whole thing - hopefully it'll all fall into place soon so that she may > be able to hear. > > Take care, > Kim > mom to Devin 8 yrs. and Saleah almost 8 mo. (CHARGE) > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.